Wednesday, December 26, 2007

More quickies; will likely start blogging in earnest again after the new year.

1)Multiple articles from Journal of Clinical Oncology:

a) First is one on oncologist communication about emotion during visits with cancer patients. It's a fascinating study, including from a research perspective: it involved audio-taping nearly 400 oncologist-patient clinic encounters (all patients had 'advanced' cancers). In this analysis (one assumes/hopes there will be subsequent ones) the researchers looked at patient disclosure of negative/ambivalent emotion, which they defined as creating an 'empathic opportunity' for the physician, and then looked at what the physician actually did. (Obviously there is room for interpretation as to whether a statement created an empathic opportunity or not, however the interrater agreement had kappas over 0.7 for almost every item they looked at.) Physicians gave responses supporting continued discussion of emotions for only ~1/4 of the opportunities presented them; younger physicians (who were more likely to be women than the older physicians and to rate themselves as responsive to the 'socioemotional' side of medicine) tended to give more 'continuers.' It would be interesting to see how patients rated their physicians' communication effectiveness, and how much they wanted physicians to attend to their emotions (although one imagines that a certain number of patients wouldn't be aware, explicitly, of those needs)....

b) There's also a trial of a 'psychoeducational' intervention for patients with melanoma. It involved 6 group sessions involving "education in health behavior withregard to malignant melanoma, stress management, problem-solving,and mutual support" (a control group received no intervention). This study was to look at long term survival, which didn't differ between groups. An accompanying editorial concisely looks over the ongoing debate as to whether psychotherapy improves cancer survival (it's cheekily titled 'Letting go of the hope that psychotherapy prolongs cancer survival').

First is one on physician attitude towards opioids for chronic non-cancer pain. This was a single institution survey of ~140 internal medicine physicians (sample included housestaff and about 20% geriatricians) about opioids for CNCP. There were some general differences between general medicine docs & geriatricians (as well as housestaff vs. attendings), but one wonders if some of these differences were because the study is from Mount Sinai in New York, where the palliative care program is housed within the geriatrics division.

The other is a natural history study of advanced cancer patients who were switched to intrathecal opioids for pain. It followed 55 patients who had 'failed' systemic opioids (inclusion criteria were trials of at least 3 strong opioids by at least two different routes) - they were then treated with intrathecal morphine with levobupivacaine. Starting 24hour morphine IT dose was 1/100th of their 24hour PO morphine equivalent dose. Mean oral morphine (equivalents) dose was 466mg/day for these patients; mean survival was 71 days - these were sick patients. Basically they found that pain decreased (8/10 - ~3.5/10, as did systemic opioid use, as did confusion and drowsiness), and the 1:100 ratio was probably too conservative (but safe - most patients went through an initial doubling-tripling of their IT dose prior to discharge which then remained relatively stable). Complications were rare. They do not comment on 1) quality of life or 2) ambulation. The notable aspects of this study was that they really tried to include only patients who had not done well with multiple attempts at systemic opioid use as well as the fact that they included incredibly sick patients. Along those lines mean hospital stay was 12 days, with an average of 7 after IT pump implantation - without measuring quality of life it's unclear to me whether the hospital stay was worth it for these patients given their short prognoses....

3)QJM has an article about communication with hospitalized patients who are likely to die. It attempts to outline, in a practical manner, a step-wise protocol in communicating with patients/families when there is a high likelihood life-prolonging measures may fail. Its major theme is one of proposing a 'trial' of life-prolonging therapy (as well as an option of comfort-only care) from the outset, and then walks the clinician through communication steps to take if the trial doesn't work. A good one for the teaching file.

4)Journal of Pain has a trial of dronabinol added to opioids for chronic pain. It involved 30 patients receiving opioids for chronic pain who still had pain at least 4/10 - they blindly received placebo, 10mg, or 20mg of dronabinol as a single AM dose and had pain/side effects measured hourly for 8 hours. Each patient blindly received each treatment once on different days. Then the patients were invited to continue in an open-label fashion. Dronabinol appeared to be mildly-moderately effective in both phases of the study, however clearly long-term, controlled/blinded data are needed. This is one of a growing number of studies, recently, re-looking at cannabinoids for pain.

5)Lancet has a review about bereavement & health outcomes. It's a comprehensive, narrative review of the research looking into this (mortality in bereaved spouses, etc.) - another good one for the teaching file.

6)BMJ has its annual holiday 'funny' issue out, which usually contains light-hearted & joke research and opinion pieces. Highlights from this one:

a) From an article on medical slang: "Mac Tilt": "The lateral movement of the head to an angle of 45° to thevertical by a palliative care nurse specialist. It is intendedto convey sympathy and understanding. (Mac from Macmillan nurse—aspecialist palliative care nurse—and tilt.)"

c) A case series on 'death delusions' (a fixed belief that one is dead) as a side effect of valacyclovir.

d) A profile of different physician communication styles when they are talking about death/dying with patients (e.g. the grim reaper, the evangelist, the deflector, etc.). They take pot shots at cardiologists: "Cardiovascular specialists segregate most often as precisionistsand are seen touting statistics gleaned from clinical trialsthat bear fortuitous acronyms such as HOPE, CARE, CURE, VALIANT,COURAGE, and MIRACLE."

Wednesday, December 26, 2007
by Drew Rosielle MD ·

Thursday, December 20, 2007

1)An article last week in the Chicago Tribune introduced me to something brand new in my experience: DNR orders for kids in schools. So where have I been? Like most people who don’t work in a school, don’t work in pediatrics, and have healthy able-bodied kids, I hadn’t given it much thought. Of course, it makes eminent sense to have this conversation. All children, by federal law, are permitted to attend school and must receive reasonable accommodation given their condition. This includes those with life-limiting illnesses and those with severe disabilities. Kids in both categories live a lot longer these days because of advancing technology and medical knowledge. This has apparently been a hot topic in schools since at least the early 1990’s, although, according to a recent study in the Journal of School Nursing, few school districts have official policies and procedures. In some states, a DNR order is not recognized outside of a health care institution, much less in a school. In others, “out-of-hospital DNR” forms are provided by the state (see sample from North Carolina at right).

The National Education Association published a Policy on "Do Not Resuscitate" Orders in 1994. The American Academy of Pediatrics published a supportive Policy in 2000. Both acknowledge the complexity of the issues and the need for state laws and local school systems to establish appropriate policies.

The issues:

General lack of knowledge (among school personnel) about the process and meaning of resuscitating a fragile child; misunderstandings of DNR

This is about death—we can’t have children dying in school; this would be a terrible burden on the staff; how would we support and reassure all the other children if we allowed a sick child to die?

Liability issues—what if we make the wrong decision on a given day?

Should DNR orders in school be limited to those children who have terminal illnesses? What about frail/fragile children with severe disabilities but not progressive illness?

Thanks to the EOL Group at the Yale Bioethics Institute for the article and my title.

2)There is an interesting UK study, published online ahead of print, in Annals of Oncology. “Strong opioid”-naïve patients with progressive cancer-related pain were interviewed about their willingness to take strong (WHO Step 3) opioids (specifically, oxycodone, which was described to the patients as being “similar to morphine”). Of 29 patients approached to participate, 18 agreed to be interviewed. They were almost uniformly (14 of the 18) reluctant to take a morphine-like drug because they associated it with advancing disease, death, and even hastening of death. They saw morphine as a “last resort” treatment option. Some (12) accepted the prescription because of the severity of the pain or the perceived impact of their pain on loved ones—“they felt they had no choice.” Interestingly, the patients’ relationship with and trust in their oncologist played a role in the decision to accept a strong opioid. If they had confidence in the physician and the physician encouraged the patient to take the prescription (as opposed to offering, then leaving it to the patient to decide), the patient was more willing to take the analgesic.

This study was obviously limited by size and study method. However, the lopsided finding of morphine being so closely associated with death is eye-opening.

An accompanying editorial succinctly reviews the literature on barriers to adequate cancer pain management. The editorialist is troubled by the findings, described above, “from the birthplace of palliative care.” He also sees physician barriers in the way patients reveal the influence of prescribers on their decision to take strong opioids. In at least once case in the study, the physician confirmed the stated fears of a patient’s daughter that the opioid would likely hasten death.

3) Effective today (Dec 19), the DEA has changed its rule on writing sequential prescriptions on the same day, so that stable patients do not need to return to the doctor’s as often for evaluation and new prescriptions. This replaces an extremely controversial DEA ruling two years ago that such serial prescriptions amounted to refills of CII medications, which is illegal. There is a short editorial on the topic on the Pain and Policy Studies Group web site.

Wednesday, December 19, 2007

I'm probably not going to be able to blog anything seriously this week, so will probably do a couple of quickie posts about articles from my pile.

1)Multiple notable articles from the most recent Archives of Internal Medicine:

a)First is an observational study on symptom prevalence in patients with COPD and CHF. 133 patients (community dwelling, mean age ~73 years, a little over a third had at least one limitations in ADL's) underwent quarterly symptom interviews for 2 years. ~40% of the cohort died during the study. Dyspnea, pain, discomfort, fatigue, appetite problems, depression, and anxiety were all quite common, and many increased in either prevalence or severity across time. Notably, pain was quite common in the CHF patients and increased in severity over time (% reporting moderate to severe pain increased from 20% to 42% over the study). More indication (not that it was really needed) that pain is by no means a problem of advanced cancer....

b)Next is a follow up to this landmark study about the 'chronically critically ill' (more or less patients needing long term ventilation after a critical illness), looking at the information families/patients received about it, prognosis, etc. This study involves data collected at the time of the first study, and looked at the information families (and the few patients who were communicative) received about their care. They looked to see if these domains were discussed:

1) nature of the patient's illness and treatments;(2) prognosis for outcomes including ventilator independence,function, and quality of life; (3) impact of treatment on patientexperience, including symptom burden; (4) potential complicationsof treatment; (5) expected care needs after hospitalization;and (6) alternatives to continuation of treatment.

The results are, simply put, dismal/disheartening, and suggest that 1) prognosis was frequently not discussed (this was a cohort of patients with a >50% 6 month mortality) and 2) alternatives to the current care plan, something which is technically necessary for informed consent, were rarely discussed. 83% of families reported not hearing alternatives to continued mechanical ventilation; 93% weren't given a survival estimate; 80% reported hearing no information about expected functional status after hospitalization. It goes on like this....

d)Finally there's an important paper looking at the natural history of QT prolongation with methadone. It's taken from a randomized trial comparing methadone (patients received 60-100mg daily) with levomethadyl or buprenorphine for patients with opioid addiction; patients in this trial had their QT interval monitored with EKGs. Depending on how they defined 'significant' QT prolongation (they looked at it in several ways), methadone signficantly increased the QT in ~12-30% of the patients receiving it over the course of many weeks. (Buprenorphine, not surprisingly, didn't increase the QT). 12% of the methadone patients, at some point in the trial, had a QTc greater than 500 msec. Notably, the QT interval continued to increase over time (4, 8 weeks), even for those patients on steady methadone doses, suggesting that an EKG done when patients should be at 'steady state' (which, with methadone, can easily be a week) is not necessarily reassuring that the QT isn't going to widen further.

2)The most recent Annals of Internal Medicine has an article about some ethical concerns with the Uniform Anatomical Gift Act (this is model legislation which states are being encouraged to adopt to improve rates of organ donation - several states have already adopted it). The authors define the concerns with a terrifying case, apparently real:

"A man has a stroke and has irreversible brain injury, but heis not brain dead. The family want to honor his wishes to "notbe kept alive on machines if there is no hope," something heput into an advance directive. However, he designated himselfas a donor on his driver's license. The physician wants to discusswhat to do next, and how to prioritize care, but he is stoppedby a new state law, modeled after the new Uniform AnatomicalGift Act (2006). The law states that, because the patient isan organ donor, his end-of-life care must be managed in a wayto promote donation, even if it compromises comforting care.His do-not-resuscitate order is reversed, and he is resuscitatedwhen he becomes hypotensive and loses pulse. Mechanical ventilation,blood sampling, and other critical care are continued. The physiciancannot discuss options, because according to the Organ ProcurementOrganization, the family does not have the option not to donate.Therefore, any decisions regarding terminating critical careare vetoed per statute. Twelve hours later, the patient is takento the operating room, life-sustaining treatments are removed,he dies, and his organs are procured. This is a true story. We believe it represents an unintendedconsequence of new language incorporated into the Uniform AnatomicalGift Act (2006)."

There has been a revision to the language noting that such actions should not conflict with 'appropriate end of life care,' but many state statutes don't reflect this. Yikes.

3)There's an interview with me that's currently on ReachMD, an XM satellite radio channel for health professionals (channel 157). It's mostly about Pallimed, with a little bit about HPM in general. I can't bring myself to listen to it, although I don't recall saying anything too humiliating.

Thursday, December 13, 2007

1)Journal of Clinical Oncology has a fascinating study on prognostic disclosure and hope. The context of this study is best summarized by its opening paragraph:

"Physicians and patients alike believe that the best medicalcommunication allows for hope, no matter how difficult thesituation. But this ideal presents challenges for physicians,who may view disclosure of a poor prognosis and provision ofhope as conflicting obligations. In service of hope, somephysicians therefore choose to limit or carefully tailor theinformation they give to patients. For example, physicians maygive no prognostic information and avoid such a discussion whenasked directly, may give overly optimistic information,or may collude in hopes of a cure by focusing on treatment options."

The study involved ~200 parents (mostly female, college-educated, and overwhelmingly white) of children with cancer at Dana Farber; the median age of the patients was 6.6 years, and the survey was done a median of 100 days after diagnosis. Most patients had good chances of survival (the physicians rated 75% of the patients as having a more than 50% chance of survival) - although thankfully the authors did some analyses of just those parents with children with low chances of survival. They asked the parents a variety of questions about how much prognostic information they received (they used a point system for different elements of a prognostic disclosure - including any discussion of prognosis, who brought it up, if likelihood of cure was shared, if quantitative data was shared, if written info was shared, if the parents thought they received enough info or not, etc.); the major outcome they were trying to measure was the impact of thecompleteness/thoroughness of the prognostic discussion on parents' reports of hopefulness (how hopeful the physicians' communication made them feel).

The major finding: most parents reported feeling happy with the amount of info about prognosis they received, and the extent of prognostic disclosure was strongly correlated with hopefulness.

The secondary findings, which are of more interest to me and probably most readers of this blog: having a poor prognosis (likelihood of cure less than 25%) was associated with lower reported communication related hopefulness. However, for the parents of those children, degree/thoroughness of the prognostic disclosure was strongly associated with communication related hope. So the not surprising finding that the parents with the least to hope for found their communication to be less hope inspiring is tempered by the evidence that talking about prognosis more thoroughly/deeply built hope. I regret writing that convoluted sentence, but don't have the wherewithal right now to fix it.

The major limitations to the secondary findings is that it involved a small number of parents (11%), which makes you wonder how reproducible they are. The major limitation to the study in general is that it involves parental recall about the content of past conversations, and one can imagine the recall being heavily shaded by the parents relationship with the oncologist, etc. Docs who are 'good communicators' may be remembered as being more thorough and more hope-inspiring - i.e. what's being measured here is parents' general perceptions the oncologists' warmth, trustworthiness, etc. The ideal way of doing this of course would be to prospectively record physician-patient(parent) interactions and then measure hope, etc. That'd be a bugger of research project, for obvious reasons, and may never happen....

Research issues aside, any study which supports the concept that telling patients the thorough truth is welcome.

As a side note about the language used in this study, patients who had a 25-49% chance of survival were classified as being 'somewhat likely' to survive, although it seems that 'somewhat unlikely' is more accurate. The language of hope is everywhere....

[Why the full reference & DOI? This is part of the BPR3 project that we are joining - which won't change the blog in any way other than a few icons & extra links like above. The full-reference is part of the BPR3 standards, as well contains code which will eventually allow the post to be aggregated and searched as part of a BPR3 database.]

"Clinicians often have difficulty communicating with their patientsabout ACP, because it explicitly raises the possibility of death.They may fear that ACP discussions could heighten the patient'sanxiety or, worse, could have an adverse effect on the outcome.In the setting of HSCT, discussions about ACP may be especiallyupsetting to patients, because they are about to undergo a procedurewith very high risks of morbidity and mortality. Patients mayfear that physicians bring up ACP because they expect the patientwill not survive. This belief stems from findings among hemodialysispatients who viewed ACP as a way to prepare for death and dyingand not just as a preparation for possibly being incapacitatedin the future. Hence, we conducted this retrospective analysis to determinewhether patients engage in ACP in the HSCT setting and to evaluatewhether the presence of advance directives was associated withadverse clinical outcomes."

I appreciate that the authors freely admitted this was being driven by clinician fear (again, per the first article, of hurting patients by talking with them honestly). The results were, simply, that having done advance care planning was associated with improved survival in both uni- & multivariate analyses. The magnitude of increased risk of death associated with not having done ACP was greater than that associated with advanced age (patients in the highest age tertile).

So, yes, talking with your patients about the future doesn't kill them. Glib quips aside, 'ACP' in this study was defined as having either a living will, a health care power of attorney, or 'life support instruction,' 3 things which don't necessitate a conversation with a physician about one's future, but I'll still stick with the above speaking points!

Thursday, December 13, 2007
by Drew Rosielle MD ·

Tuesday, December 11, 2007

1)Journal of the American Geriatrics Society has a longitudinal study about decision making preferences in the elderly. It looked at 147 patients with advanced illnesses (metastatic cancer, ALS, or heart failure with a likely prognosis of less than 2 years) who were prospectively followed for up to two years. They were asked a series of questions about how they wanted their physicians to make decisions for them if incapacitated (on a continuum from completely based on what they think the patient wants to completely based on what the physician thinks is best) as well as how they would want their loved ones to make decisions for them if they were incapacitated (on a continuum from the loved ones making decisions based on what they thought the patient would want to based simply on what the loved ones think is best for the patient...they were trying to capture how much patients would endorse a 'substituted judgment' ideal as opposed to a 'best interests' ideal). It is similar in some ways to this paper I recently blogged about - both papers use the same basic scale to measure decision making preferences (that post also explains what the 'blogging on peer reviewed research' icon is all about for those of you who missed it).

At baseline there was a wide spread of preferences, with most answers in the middle, however they were definitely skewed towards relying more on substituted judgment (and not 'best interests') and more passivity/reliance on physicians in regards to how they prefer to make decisions. The preferences regarding loved ones pretty much stayed stable over time, and not surprisingly older patients (over 80) endorsed a 'best interests' standard more than younger ones. Preferences for physician involvement for decision making shifted, slightly but significantly, towards more substituted judgment over time, particularly in college-educated patients.

Several points here: the findings broadly support the idea that patient's decision-making styles/preferences are stable overtime, suggesting that advance care planning - talking with people as to how they want decisions made when they are relatively healthy - is a reasonable endeavor. This is also further research that the ideal of substituted judgment may not even be much of an ideal (in the sense of being what we should be striving towards). Patients themselves don't endorse it, instead endorsing (I'm speaking broadly here) a mixture of patient preference and physician recommendation of what's in a patient's 'best interests.' This is of course how most patients, most of the time, make decisions anyway, and so none of this is surprising. There are very few patients, after all, who wouldn't take into account their physicians' recommendations about the best thing to do: this is what physicians do and if all patients needed to do was to look their problems up on WebMD and 'decide for themselves' physicians wouldn't be needed anyway.

Two questions raised by this study: what is going on behind those shifts towards substituted judgment over time by many of the patients in this study? What drives that - could this be a marker of something deeper in the way patients conceive their disease, their story, and their role in it, in some way that changes over time? The other question I had is what did the patients themselves think about this attempt at distinguishing between what people think is in their 'best interests' vs. what people think they, themselves, would choose? Wouldn't they choose what was in their best interests? While clearly patients went along with the research and answered these questions (and most of them wisely answered somewhere in the middle), did they think that these distinctions, which have historically been important from a medical-ethical-legal perspective, were in fact coherent, meaningful distinctions?

Sulmasy, D.P., Hughes, M.T., Thompson, R.E., Astrow, A.B., Terry, P.B., Kub, J., Nolan, M.T. (2007). How Would Terminally Ill Patients Have Others Make Decisions for Them in the Event of Decisional Incapacity? A Longitudinal Study. Journal of the American Geriatrics Society DOI: 10.1111/j.1532-5415.2007.01473.x

2)Journal of Clinical Oncology has an article about symptom prevalence in lung cancer in relation to time of death. The study involved prospectively gathered symptom data from 400 Swedish patients (mean age 66 years) starting shortly after they were diagnosed with inoperable lung cancer. Data were gathered at multiple, pre-specified points up to 1 year after diagnosis. Symptom prevalence, intensity, and distress were all measured. Most patients died during that year, and the researchers analyzed their symptoms as a function of time before death (comparing those in the last month of life; last 1-2 months of life; 2-3 months; etc.).

Reflecting the number of data points they gathered, this article has a couple of the most astonishingly complicated tables I have ever seen in a clinical research article: if Edward Tufte was dead he'd be rolling in his grave. They are bad enough to be described as non-"human-readable." Thankfully, there is text to summarize them: breathing problems, pain, and fatigue were consistently rated as the most distressing symptoms, and most symptoms, notably pain and dyspnea, worsened as death approached. Half of the patients approached to participate in the study declined, and a good percent of them declined because they were too fatigued or ill-feeling; one wonders how much worse the findings would have been if these patients had participated.

The fact that symptoms and function worsen as one dies is not surprising or new (although rarely presented in such glorious detail). The more interesting finding is that symptom distress was less predicted by symptom intensity earlier on in the disease (later one distress and intensity closely correlated): pain and dyspnea were relatively mild early on, but still rated as among the most distressing. The authors speculate that anxiety/worry early on about future severe symptoms (of pain and dyspnea) may actually make low-grade pain and dyspnea that much distressing even early in the course of inoperable lung cancer. It's the worry about the symptoms, the realization that they will inevitably get worse, which make them so distressing early on. An interesting hypothesis raised by these data; one hopes they look into it further (it may be amenable to intervention via simple reassurance).Tishelman, C., Petersson, L., Degner, L.F., Sprangers, M.A. (2007). Symptom Prevalence, Intensity, and Distress in Patients With Inoperable Lung Cancer in Relation to Time of Death. Journal of Clinical Oncology, 25(34), 5381-5389. DOI: 10.1200/JCO.2006.08.7874

"But hospitals were less good at delivering bad news. Only 57%of the patients had been told that they did not have long tolive, and only 45% recognised the nature of their condition.However, over 80% of carers were aware of the diagnosis, indicatingthat staff find it easier to discuss the issue of dying withrelatives and friends."

Or the patients, themselves, were too sick to even receive the news? This is not discussed in the news item. I'd be fascinated to see a similar audit done in the US, but doubt that will happen since we don't have an integrated health system.

4)Thanks, Christian, for setting up the Pallimed donation celebration. We are doing this for you Pallimed readers who are also Pallimed appreciators and want to show it in this way. Thank you. And yes there's some schwag that Christian cooked up, as well the quite useful Hospice & Palliative Care Formulary (US version) that the editors at Palliativedrugs donated.

Tuesday, December 11, 2007
by Drew Rosielle MD ·

Sunday, December 9, 2007

I just came home from the 4th Cachexia conference in St. Petersburg, FL. This conference originated in Berlin, and this is the first time it has been hosted in the United States. The primary focus is basic science but the conference had a clinical track, which from prior participants sounds like it is becoming more significant. The speakers and attendees are mostly from Germany, Italy, Japan, and Australia, as well as the US, so this conference surely has an international flair. One great comment I heard from a German physician, after I introduced myself as a palliative care physician was, "Oh. You are finally doing that here in America. I didn't think that was something that had really caught on over hear yet." I heard something similar from a British scientist as well.

While we have been rather pessimistic about treatment of cachexia here at Pallimed, the conference speakers and attendees were are very hopeful about the future of cachexia research and treatment opportunities. It was enlightening to speak to scientists working with animal models of cachexia to give them some insight in how clinicians see (or really don't see) cachexia as part of the disease process in humans.

Approximately 300 attendees were present for the first plenary session which featured some of the leaders in cachexia research: John Morley (St. Louis, USA), Bill Evans (Little Rock, USA), Stefan Anker (Berlin, GER) and Giovanni Mantovani (Cagliari, ITA). Most of the initial lectures focused on the dilemma of definitions and differentiating cachexia from anorexia, sarcopenia, starvation. But despite that attempt at clarification there was still some overlapping definitions among all the speakers later in the conference.

Apparently, only recently has there been some effort to have a consensus statement on defining cachexia. There was even a push at one time to rename cachexia as 'wasting disease syndrome' to be more appealing to Americans. Thankfully that did not win out, since cachexia is a perfectly workable word. It even has an 'x' in it like most popular brand medications, so you think that would help.

Thursday, December 6, 2007

Thank you so much for joining us for a great year of palliative care blogging. We are very appreciative of your readership and comments. The three of us are committed to continuing Pallimed as a timely and interactive source of palliative care information and commentary. We are also committed to keeping Pallimed ad-free, and we plan on never making this a subscription only service. But we would like to show that Pallimed readers a group can make a difference, so we will have our first annual Pallimed Fund-Raiser, just in time for the season of giving and tax-deductions. This year we will work with Donors Choose to help fund school projects around the United States.

To demonstrate our community ability to give follow the following simple instructions:

1) Go to www.donorschoose.org2) Search for a school project that matches your interests (science, art, history, local, low-income, you pick)3) Choose your donation level4) In the acknowledgment choices, choose "This donation is a gift in someone else's name"5) Enter the following information:(Please note, my name/contact info is to collect all the thanks, which I will post on Pallimed in January. I'm not looking for any fame/honor. Just coordinating. You still get the tax deduction. Not me.)

We will collect the # of donors and total donated and keep a running tally.

This fund raiser will be open for the month of December only. Pallimed will not make this tradition more frequent than once every Winter.

And to also reward our readers we have prizes for the end of the year:

1 copy of the Hospice and Palliative Care Formulary USA donated from the editors of palliativedrugs.com (there will be an upcoming review of this book here, and it makes a great holiday gift to your palliative care unit/hospice house!)

3 Pallimed coffee mugs with the Pallimed logo!

State raffle rules prevent us to tying it to donations, but if you can enter for free by:

1) entering a comment on this postOR2) you are already signed up for email posts (doesn't work for RSS to get specific info)OR3) you email me at ctsinclair (@t) gmail (d0t) com with "Contest" in the subject line

Winners will be announced in the first week of 2008.

Please show your support of all the ad-free helpful information from Pallimed by giving to the school project of your choice. Together we can make an impact.

Thursday, December 6, 2007
by Christian Sinclair ·

Tuesday, December 4, 2007

First is one in JAMA on dementia and eating problems (from their 'Clinicians' Corner' series). It uses a case of a man with advanced dementia and poor oral intake to discuss palliative care in dementia, focusing on the problems with oral intake, lack of data to support tube feeding, problems with communication about tube feeding, etc. Part of the 'Clinician's Corner' style is to have Q&A and I found this bit from the end as to why even tube feeding is brought out as an option to be interesting (even when the clinician has no intention of recommending it...it's as if it's considered a standard of care [demented, don't eat well --> gastrostomy] that has to be acknowledged):

"QUESTION: I wonder if you could reflect for a moment on whatI see as a big failure in US medicine. One of the things weare supposed to do as physicians is present options. But witheverything we know about this situation, why in the world wouldwe be presenting tube feeding as an option to a patient likeMr P?

DR MITCHELL: In my personal practice, I don't introduce theoption of tube feeding for a patient with advanced dementia,unless the health care proxy specifically brings it up as apossibility. However, once the option of tube feeding is raised,physicians must be prepared to counsel the family through thedecision-making process.

On a broader level, there are several possible reasons why tubefeeding remains an option that is commonly presented to patientswith end-stage dementia in the US health care system. Thesereasons include the strong symbolic significance of feeding,an emphasis on individual autonomy in medical decision making,the wide availability of medical technology, discontinuity acrosshealth care settings, fear of litigation, and health care policiesthat may facilitate curative treatments over palliation. Of note, tube feeding in advanced dementia is less common inother developed countries (eg, Canada), where differenthealth systems and cultural attitudes toward death and dyingmay facilitate a greater willingness to forgo aggressive end-of-lifeinterventions."

Damn those reasonable Canadians once again. (Canadian readers: is this true?) Anyway, the subject which I was hoping would be brought up, which a bright resident asked me the other day after talking about this topic, is Why even get swallow studies on this patient population? I told him it was a great question, and there are certainly reasons to do it (defining a diet that doesn't make you have a coughing fit every time you eat is a good quality of life intervention), but the knee-jerk leap to doing a swallow study (leading to an NPO recommendation --> hour long conversation with family about how you think we should ignore the NPO recommendation) is in no one's best interests. I'm looking for a reference that talks about this topic, and this wasn't it, which is OK, since I doubt it was written with my idiosyncratic didactic needs in mind, but if anyone knows of one, please leave a comment.

The other is from the NEJM and is about the management of depression in the elderly. It's practical and general review and quite positive about ECT for refractory depression. It had this interesting nugget:

"However, a recent studysuggests that a full response [from first line pharmacotherapy] is expected in two thirds of patientswho have partial improvement after 4 weeks of treatment, ascompared with about one third of patients without a responseat 4 weeks. Even under the best of circumstances, only 40to 65% of patients have an adequate response to any given antidepressant,and trials of alternative antidepressants or combinations ofantidepressants, with or without psychotherapy, are requiredin a substantial number of patients."

2)BMJ recently had a research letter about overly-pessimistic prognostication, by physicians, for COPD & asthma patients being admitted to ICUs in the UK. It involved ~800 patients (over 45 years old) being admitted to numerous UK ICUs for exacerbations of obstructive lung disease (some had asthma); their physicians were asked to predict their ICU, in-hospital, and 180 day mortality. This is a relatively brief letter, and the results weren't given in great detail, but the overall results were that physicians were overly-pessimistic. Overall survival was 80% ICU, 70% hospital, and 62% at 180 days. There is a figure that graphs actual with predicted survival which is tough to summarize in words other than to say predictions were consistently pessimistic and particularly so for the patients at highest risk of death (predicted 180 day survival 3% - actual was 36%).

Much of the discussion of the paper (including in this accompanying editorial) has to do with UK-specific concerns with ICU bed shortages, etc. While I'm sure the findings are valid, one also has to wonder what they actually mean. These were patients, after all, that these same pessimistic clinicians were transferring to an ICU despite their pessimism, so it wasn't actually changing their care, at least as far as that goes. What is the survival of patients who weren't admitted to the ICU (due to poor prognosis, and how would one even begin to ethically identify those patients for a research study?)?

Anyway, a tantalizing bit of research and one that highlights the perils of prognosticating time in patients with COPD. Where to begin? No robust, evidence based method of predicting prognosis with precision greater than a year or two. For patients hospitalized with COPD we have pretty good ways of saying who are almost certainly going to survive, and who are at relative high risk of death, but still for those it's pretty much a coin toss. Physicians making decisions about COPD patients prognosis and care are, at least in the hospital, seeing these patients at their absolute worst/sickest, and while COPD is an unrelentingly progressive disease, and when people get sick they can really get sick, they also often recover a substantial amount. That's why, to me, it seems making these sorts of predictions is a losing battle, and decisions about 'aggressiveness' of care shouldn't be made (usually) because we are confident that, for instance, intubation isn't going to help but for other reasons (such as the patient's baseline status, perceptions of quality of life, and goals; e.g. the patient who says 'if all intubation is going to do is potentially restore me to being nearly bedbound then I'd rather not come into the hospital at all'). I hope to be proved wrong, but I think COPD is, by its nature, inherently unpredictable (unlike, relatively speaking, many cancers), and decision-making should be based things other than a confident prediction of time. Where this leaves our hospice colleagues is another question....

Thanks to Dr. Bob Arnold for alerting us to this paper.

3)The NY Times Sunday Magazine this week has a feature on assisted suicide. It's mostly a broad look at it through a handful of personal stories (the major one involves a former governor of Washington state who has Parkinson's and is campaigning for a PAS law). The focus is, interestingly, the non-"pro-life" arguments against assisted death - focusing on concerns about the disabled, those without insurance, women, the most vulnerable. So the 'slippery slope' arguments - not the it's wrong/life is precious at all costs arguments. The article mentions that in Oregon there has been zero evidence to suggest that those groups (the vulnerable) are being disproportionately affected by PAS but then goes onto to treat these as major concerns - it's rhetorically dishonest in my opinion with the way it treats the research findings (acts like they are real problems when they aren't). I'm no fan of PAS, but I think we have to be honest about what has happened with it in Oregon: it's hardly been used, it has not been used disproportionately by the vulnerable, and the concern that PAS was going to be heaped upon the poor, the disabled, etc. just has not panned out. One assumes this is because the Oregon model is, by design, patient-driven - and concerns that docs, insurers, etc. would suggest to people that their lives weren't worth living, and the patients themselves would go "You know, you're right, can I have some of that PAS?" just haven't come to pass, for obvious reasons. There a reasons to object to legalizing PAS but the slippery slope concerns shouldn't be part of it (at least based on the Oregon experience).

The article is also a premiere example of why some/most are interested in PAS: it's not because of actual physical suffering/pain, but because of perceived future pain/suffering/loss of control & lack of finding meaning in the inevitable disability, dependency, and contraction involved in dying. "My life, my death" - that sort of conception of dying....

Tuesday, December 4, 2007
by Drew Rosielle MD ·

Monday, December 3, 2007

(Editor's note: Tom posted this on Saturday but it never got distributed by Feedblitz, our email updater, so I'm re-posting it on 12/3/7 in order for it be sent out for those of you who read the blog only via email.)

A Sebastiano Mercadante review is something that always catches my eye. He tends to be thorough and to look at the evidence critically. His recent article in Drugs and Aging on pain management in elderly cancer patients continues the trend. Edoardo Arcuri, a frequent collaborator, is co-author. Another Mercadante characteristic is a willingness to criticize other clinicians. The article cites, among the barriers to adequate management of pain in elders, a study finding that hospice nurses caring for the elderly "are almost twice as likely to incorrectly leave pain off a problem list than to incorrectly ascribe pain to a patient not reporting it." Even more pointed is a zinger at physician "unwillingness" to monitor opioid-related adverse effects.

The article also asks some important questions related to common assumptions about pain and elders: Do older patients feel less pain? Are they more sensitive to analgesics? In general, the answer to both questions is: the evidence is lacking, is unclear, or is contradicatory. The clinical bottom line, then, is: begin at lower doses than one would for younger adults, but be prepared to titrate to patient response. Unfortunately, they do not specify what "lower" means, but most clinicians start at 50% of the "usual" starting dose for opioids. They also say, however, that a cautious approach should not become one of "wasting time" when pain is acute. Pain can be aggressively managed and doses tritrated upward as needed as long as monitoring is frequent and appropriate to the patient's condition.

They particularly counsel caution with traditional (nonselective) NSAIDs because of the higher incidence of severe adverse effects as age increases. "NSAID renal toxicity may appear at lower doses in the elderly with subclinical renal insufficiency."

In the section on opioid elimination they point out that due to decreased muscle mass, serum creatinine is a less reliable predictor of glomerular filtration than in younger patients. Excretion may therefore be slower than predicted by serum creatine values.

Required skills for successful pharmacologic management of pain:

objectively assess functional age

understand the impact of coexisting conditions

carefully manage the number and type of medications taken concurrently

adequately communicate with patients and relatives

Other specific points:

pain assessments and use of analgesics tends to decline as patients get older: those over 85 are at greater risk than those at 65, but there is no evidence that pain is experienced less

there is great variability in physiologic and functional aging--the rate of decline is variable

"the hypothesis that elders have a higher threshold for pain has not been supported"

"no physiologic changes in pain perception in the elderly have been demonstrated"

in general, elders require lower doses of opioids, but "only careful titration based on individual response can ensure that patients receive the level of analgesia that they require"

elders do not have a greater incidence of side offects with opioids, but when they occur they tend to be more severe

"the rate of drug delivery rather than the absolute dose over time was seen to influence both analgesia and side effects" (translation: increased dosing interval for immediate release opioids may be necessary)

renal function is more important than hepatic function in the development of toxicity from morphine (glucoronidation can occur even in fairly advanced hepatic dysfunction)

It seems to be a common rule of thumb in this country (at least in the academic medical centers of my acquaintence) that hydromorphone is the preferred "first choice" opioid for elders or the first alternative should toxicities to morphine develop. This point is not even addressed in the article. Except for potency, they seem to indicate that morphine and hydromorphone are about the same. Oxycodone is recommended as a good alternative because the "pharmacokinetics of oxycodone are mostly independent of age, renal function, and serum albumin." Of course, parenteral oxycodone is available in Europe, but not in North America. Transdermal fentanyl is also said to be worthy of consideration for patients with chronic pain and reduced renal clearance, because it "might be better tolerated than morphine because of lack of accumulation of important metabolites." They caution, however, that the decreased lean body mass to fat ratio may may "facilitate fentanyl accumulation once fat and muscle stores are saturated."

This may be one of those articles to consider for Drew's famous Teaching File. It requires a close read, but provides an excellent "if you only have time to read one article" resource.

A research team at the Mayo Clinic presented findings this week at the meeting of the Radiological Society of North America on its study of cryoablation for pain resulting from metastatic bone tumors. 34 patients with 10 different tumor types were treated. 80% reported "clinically significant" pain reducation that persisted at 24 weeks after the procedure. Next up: a multi-institutional study that compares cryoablation head to head with radiation therapy.

A study (secondary analysis of a bisphosphnate study) published online ahead of print in Cancer this week again highlights the disparity between Caucasian and non-Caucasion patients in pain from advanced cancer. This study found that in a large international (19 countries!) cohort of women with metastatic breast cancer non-Causasian women (82% of whom were from the US) reached a pain level of 7 or higher (Brief Pain Inventory) significantly earlier than white women. They suggest that race be considered a risk factor for pain and that clinicians be prepared for aggressive and earlier intervention for pain in non-Caucasian women.

An article in the October issue of the Fordham Law Review uses the recent trial of a doctor accused of murdering/euthanizing her patients during the Katrina disaster to launch a discussion of intent and the use of "risky pain medication" at the end of life. It's pretty dense & legalistic (oh yeah, its the Fordham Law Review) but essentially defends judicious use of pain medication at the end of life (for pain) and "terminal sedation" [there are plenty of other terms that can be used; this one is particularly loaded] for intractable symptoms. Many people, of course, have raised the ethical issue that intent is difficult for a 3rd party to determine. In a criminal trial, a prosecutor has to convince a jury that the intent was to hasten death. My own opinion: since there is no evidence that appropriately titrated analgesics and sedatives hasten death--and evidence is accumulating (examples here and here) that they don't--double effect is not usually necessary as an ethical basis for defending the use of either class of drug in patients near death and experiencing severe symptoms.

Pallimed: A Hospice & Palliative Medicine Blog Founded June 8, 2005.
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